Caring for Someone With Mesothelioma
If you’re a mesothelioma caregiver, it’s normal to experience a range of feelings, from sadness and exhaustion to a sense of purpose and meaning in helping someone you love.
Mesothelioma caregivers essentially become part of the patient’s extended cancer care team. They help their loved one make appointments, travel to and from the hospital, do daily chores like cleaning and grocery shopping, and so much more.
It’s an important role, but it can quickly become physically and emotionally taxing. For this reason, it’s critical for caregivers to get help and support from their family, friends and community members, support groups, and other organizations.
“It was very tough on my family. Very hard on my kids. Hard on all of us. It changes your life. Cancer changes everybody’s life.”
To provide the best care for your loved one, you must first take care of yourself. Download our Free Self-Care for Caregivers Guide today for practical tips and advice to help you prioritize your own well-being.
4 Caregiving Tips for Mesothelioma Patients
If you’ve taken on the role of caregiver for your loved one with mesothelioma, these tips can help you manage your workload, stress levels, and competing priorities.
- Prepare for your new role. Gather as much information as you can to know what you and your loved one can expect in the coming days. Mesothelioma Hope has a wealth of free resources we can share, and our Patient Advocates are always here to answer any questions you may have.
- Accept help. Caregiving is a team effort, and you can’t bear the weight of it alone. Whether it’s from other family members, friends, community members, or volunteers, it’s important for you to get support.
- Take care of your own needs. Mesothelioma caregiver burnout is very real, so you need to take care of yourself first and foremost. This includes allowing yourself to take breaks from your duties, prioritizing your physical and mental health, and asking for help.
- Find community. Mesothelioma caregiver support groups and peer mentor programs are available in person and online. Joining a support group can help you find community with others who are in a similar situation and can share advice and a listening ear.
The importance of self-care cannot be stressed enough for mesothelioma caregivers. By caring for yourself, you’ll be in better shape to help your loved one.
“Your own health and safety must come first if you want to keep helping your loved one.”
A 2022 study published in Palliative Care Review found that caregivers’ quality of life can be boosted by gaining knowledge about their loved one’s disease and treatment options, getting other family members involved, and maintaining an optimistic attitude.
Caring for the Caregiver
Regardless of the role you take on for your loved one with mesothelioma, it’s important to continue taking care of yourself. Self-care may include regular exercise, healthy meals, getting plenty of sleep, and seeking a mental health professional if you notice signs of depression or anxiety.
“If you don’t take proper care of yourself, you won’t have the energy or interest to help someone else. You show up every single day for a person that you love and care about, but constantly seeing them in pain and being needed to assist them is emotionally taxing.”
Read more about processing grief and coping with a mesothelioma diagnosis in our blog, Good Grief: Coping Skills for Patients and Caregivers.
If you live in a different city, state, or country from your loved one when they are diagnosed, it can add an additional layer of emotion.
In some situations, you may be able to relocate to act as the primary caregiver for your loved one — but sometimes that just isn’t possible. Luckily, there are still ways to provide long-distance care.
Long-distance loved ones can support mesothelioma patients by:
- Calling, texting, or video chatting to keep their spirits high
- Identifying ways to help them pay for treatment, like travel grants, VA benefits, and private legal claims
- Researching new treatments being tested in clinical trials
- Sending care packages to their home after treatment
- Watching their pets while they’re in the hospital
Mesothelioma Caregiver Resources
Navigating your mesothelioma caregiver responsibilities can be a big undertaking. Thankfully, there’s help available to make your life easier and less stressful.
Learn about mesothelioma caregiver support resources below.
Informational Resources on Mesothelioma
A study published in the June 2022 edition of the European Journal of Cancer Care followed 14 people who had provided care to mesothelioma patients. Among the findings, the researchers noted that the caregivers’ lack of information about the disease and uncertainty about a patient’s prognosis caused them stress.
Knowing what you’re up against will give you confidence as you take on your new role of caregiver. Your loved one’s mesothelioma doctor can help provide information on their specific diagnosis.
You can learn about mesothelioma from these groups:
- American Cancer Society
- American Lung Association
- Mayo Clinic
- National Cancer Institute
- National Organization for Rare Disorders
You can also speak with our registered nurse to ask specific questions about mesothelioma and learn what to expect. Call (866) 608-8933 to speak with Nurse Jenna or one of our other Patient Advocates today.
Mesothelioma Caregiver Support Groups
Mesothelioma support groups connect you with other caregivers and provide a safe place to speak openly about your emotions and challenges.
Peer mentor programs are also available if you’d rather speak to someone one-on-one rather than in a group setting.
Mesothelioma caregiver support groups are available:
- Over the phone
- Via peer mentor programs
Respite care provides short-term, temporary relief for caregivers. During a set period of time, a medical professional can care for your loved one and make sure their needs are met.
This gives mesothelioma caregivers a much-needed break to manage work, family, and household commitments — or simply relax. Respite care also allows you to recharge, so you can return feeling rested and refreshed.
You may be able to use Medicare or Medicaid to cover the costs of respite care. Use our free chat to get help finding and paying for respite care.
Mesothelioma Caregiver Duties and Roles
Some of the duties of a mesothelioma caregiver include participating in the patient’s cancer care team, interacting with doctors, solving problems, and managing day-to-day tasks.
Sharing responsibilities with others in the family is a great way for mesothelioma caregivers to get support. This strategy allows the patient to get the help they need while preventing one person from doing all the work.
Below, learn about different responsibilities loved ones may take on when caring for someone with mesothelioma.
Spouses often take on the role of primary caregiver, leading the mesothelioma patient’s care and recruiting others to help. In many cases, they help research mesothelioma treatment options.
Spouses of mesothelioma patients may need to:
- Ask family and friends when and how they may be able to help
- Hold regular family meetings and provide updates on the loved one’s condition, needs, and care
- Make a list or calendar to keep shared responsibilities organized
If other family members can’t provide help, spouses can turn to friends, church members, or neighbors.
“My wife is always going to be there for me, and I’m honored to always be there for her. Look what we’ve already gone through together. We can make it through anything as long as we’re holding hands.”
Adult children are often a big part of a cancer support team, particularly if the mesothelioma patient and their spouse are elderly or have additional health issues.
Children can provide support by:
- Driving their parent to medical appointments and taking detailed notes
- Helping with chores around the house
- Hiring outside nursing help for in-home care
- Visiting their parent regularly to keep them company
If the mesothelioma patient is not married or their spouse cannot provide care, grown children may need to become the primary caregiver.
“My father is not the type of person to cause problems or pursue confrontations with anyone, but I am the opposite. If I see a problem, I tackle it head-on. That’s why I started fighting on his behalf from the beginning of his diagnosis.”
Close siblings can offer emotional support to those fighting mesothelioma. For example, siblings may be able to recount fond childhood memories that no one else would know. This can be a great comfort to patients.
Siblings can also serve as caregivers if the patient’s spouse and children are unable to do so, or if they simply need a break. In this way, siblings can help alleviate pressure on the primary caregiver and contribute to a healthier environment for everyone involved.
Siblings can provide support by:
- Caring for the patient’s children or pets
- Driving their sibling to medical appointments
- Providing a break in responsibilities for the primary caregiver
“When you have a loved one fighting for their life, I promise you that you will find yourself standing right beside them, fighting just as hard.”
Other Family and Friends
Although mesothelioma mainly affects those over the age of 70, younger mesothelioma patients may be able to rely on their parents for care. If the patient is married, parents can support the spouse’s caregiver duties. In other cases, a parent may serve as a primary caregiver.
Additionally, mesothelioma patients often have friends or other relatives who are willing to help with care. For veterans with mesothelioma, this may include the men and women who served with the patient in the past.
Sometimes, friends and extended family may not be sure how to help. They can start by staying in regular communication with a patient and their mesothelioma caregivers.
Get help caring for your own needs so you are best equipped to take care of your loved one — download our Free Self-Care for Caregivers Guide now.
Get Mesothelioma Caregiver Support
No matter how much you love the mesothelioma patient in your life, it’s not easy to be a caregiver. Whether you’re a spouse, close relative, or friend, remember there are many ways to get support.
Mesothelioma Hope’s caring team of registered nurses and Patient Advocates can help you:
- Connect with a specialist for proper patient care
- Determine how your loved one will pay for treatment
- Find a mesothelioma support group or peer mentor
- Locate respite care opportunities
- Take care of your physical and emotional health
Mesothelioma Caregivers FAQs
How do you care for someone with mesothelioma?
People who care for mesothelioma patients often perform a variety of duties that vary depending on the patient’s needs.
Your loved one may need more involved care if they are in a later stage of mesothelioma.
Common mesothelioma caregiver duties include:
- Bathing and dressing the patient
- Cooking food and helping the patient eat
- Coordinating treatment plans
- Driving the patient to and from doctors’ appointments
- Giving medications
- Hiring a home health aide or nurse
- Locating the best cancer center or health care facility for your loved one
- Managing Medicare, Medicaid, and other health insurance
- Navigating end-of-life care, including hospice care
What should I expect when caring for a mesothelioma patient?
For mesothelioma caregivers, what to expect in the role will likely change over time.
At first, you may find yourself providing moral support until mesothelioma treatment starts. After treatment, you might need to help your loved one through the recovery process and manage any lingering symptoms and side effects.
You can also expect to feel both rewarded and challenged. Caring for someone with mesothelioma can be incredibly taxing, but it can also strengthen your bond.
What are some common mesothelioma caregiver struggles?
Loved ones of mesothelioma patients may take on a significant caregiving burden, both practically and emotionally.
There are many struggles that caregivers may face, including:
- Caring for their families in addition to caring for their loved one with mesothelioma
- Feeling a sense of depression, anxiety, fear, or overwhelm
- Juggling their existing responsibilities with new caregiving ones
- Navigating insurance, medical care, and other often confusing elements of a cancer diagnosis
It’s important to ask for help if you are dealing with any of these struggles. Whether that’s through family members, volunteer organizations, or professionals, help is available to you.
Is there such a thing as mesothelioma caregiver burnout?
Yes, people show signs of stress in different ways, and caregivers are no different.
Some common signs of caregiver stress and burnout include:
- Chronic exhaustion
- Difficulty sleeping
- Disconnecting from others
- Frequent or recurring illnesses
- Irritability and forgetfulness
- Loss of interest in hobbies
It’s important to note these signs early on and take action by taking a break or getting professional help. Stress and burnout can take a toll on your health and the quality of care you’re able to provide.